The most boring disease : Without... - Parkinson's Movement

Parkinson's Movement
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The most boring disease

bassofspades
bassofspades

Without dopamine, everything seems so terribly BORING! I just can't seem to get excited about anything anymore.

End of rant.

80 Replies
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And I can try to fake it but I can't fool myself for very long.

Yes ….pretending to be an normal person day after day IS exhausting....It's good you have music. Walking out in the air also gives the brain a lift but this apathy feeling is a not so funny battle and is NOT depression so depression medication only adds to the problem. I liken it to walking on a treadmill and getting nowhere.

I'm becoming a YouTube fan>love flash mobs, music and dancing and good non-violent movies (hard to find I may add). You make other people feel grateful for something you do and there is lots to feel grateful for. I try to remind myself everyday and I'm grateful for your post because it reminds me, sadly, that I'm not alone in the battle. Thanks!

That sounds like a really good reason to keep taking some form of levodopa, bass!

My neurologist 's new PA just upped my dose from one. CL 25/100 to one and a half CL 25/100, and it doesn't do shit.

Yeah, I know! Tell me about it, bassofspades! Same with me.

Hi Bass! Do you only take 1 dose a day? That is a small amount. Would your Dr allow more per day? Or supplement with Mucuna possibly? I agree even medicated happiness seems fleeting though I try to act it for my kids sake. It’s difficult i feel your pain my friend!

jujulini
jujulini
in reply to chartist

I agree with chartist. Increase c/l or frequency of c/l

Do you have any pets? Like Harry Truman said, if you want a friend in Washington, get a dog.

My wife has 3 cats and I have a tank full of assorted sea creatures, and they're all boring too. I make friends very easily, that's not a problem! Lol

Music?

That's about all

Music.....that's a lot!!!! I couldn't be without music, ever!!! I love dogs, so I'm biased on that issue!

Art

Wat? You find your assorted sea creatures boring? Something tells me it won't be long before those sea creatures end up in a very tasty pot of fish stew and eventually in your stomach... without you having a flinch of guilt 😟

I know exactly what you mean.

Try playing in 7/4 :-)

🤣

bepo
bepo
in reply to bassofspades

Everyday, remind yourself aloud, what you are thankful for. Change it every day.

apathy can become lethal

Go on a trip! Nothing makes life fresh and a new again like visiting a new place.

I know how you feel, the only thing that gets me out of the fog is exercising. I have to force myself because I’m tired after work but it helps so much!

Bass are you still doing the intermittent fasting? I go through phases but it’s such a hard thing to do when there’s so much food everywhere you go!

Yes. It feels good but im not losing weight.

Your message is loud and clear. The problem is, if you are not positive and taking care in everything you do, then things can become even more difficult, and a lot more boring!

Trust me when I tell you, i do anything and everything!

Sometimes we tend to do too much; not that I am insunuating anything; just a thought!

When I feel overwhelming boredom, I have to ask myself 2 questions. Is it from having a routine that’s so inflexible I don’t have time or curiosity enough to seek out interesting experiences? Or is it because, as a result of maturity/coping with PD, etc, a lot of the drama that once abounded in my life has faded away. If the former, a new audiobook or a day to go into the “city” to visit old friends/grandkids or hear live music can give me a jump start. If due to the latter, I try be mindful of the peace that living without excess drama can afford, and If I need external drama, tuning in to podcasts about world events provides plenty of it.

At a Dr visit after I retired, he let me ventilate about 50 seconds about my boredom, lack of stimulation, etc. Then he said “Well, you will just have to use this as an opportunity to help others who are less fortunate “. I was “schooled”, right?

Thats good advice

'Parkinson's Laugh with me' Facebook Group, Only for Parkies + Pd carers + families. Only jokes, Puns memes etc. 'NO' serious parky talk, the idea is to forget about the wee shite of a disease. Passes 30mins or so!! All Pd'ers welcome!

Mate. The most exciting thing is the discovery that the probiotic bacillus subtillus can actually destroy the alpha synuclein protein that misfolds the proteins in the brain that cause PD.. Add to that the fact that DCA activates the mitochondria in cells to ensure that cells respond the way they are meant to and we almost have a treatment for PD.

bassofspades
bassofspades
in reply to Getz

Ive been taking it 3 weeks. Nothing so far

mitel
mitel
in reply to Getz

What does DCA stand for

Getz
Getz
in reply to mitel

Dichloroacetate. Check Prof Michelakis of Alberta Uni. He's done a fair bit of work on it.

bassofspades
bassofspades
in reply to Getz

Have you tried this?

Mannitol stopped my apathy and i back to glass half full.

Another great story about mannitol. How much do you take and from whence is it sourced?

4000Nights
4000Nights
in reply to MarionP

lot of sources including Amazon online. A tablespoon in your morning coffee. It is a sweetener so instead of sugar if you use sugar.

MarionP
MarionP
in reply to 4000Nights

Great! Thanks

Syncolein.com

This product website uses the well-established snake oil word "transformative." It also makes a very grandiose claim about mannitol breaking up alpha-synuclein and mis-spells a word in the ad. Thus, beware of a con job.

Syncolein is not a 'con'. I hv been well treated by Dom for well over a year. You seem very cynical 😠

I do? What makes you say that? I offered some proof and my personal impression based on it and experience. You offer nothing to distinguish what you say from, say, one of his business partners or shareholders.

Ok, so everybody, from this guy's website:

"Research shows that Mannitol breaks up the alpha-synuclein clusters in the brain that kill braincells. When the alpha synuclein clusters are broken up the progression of the disease is stopped."

"ground breaking Israeli research that may answer the prayers of millions of patients, suffering from Parkinson's disease. Mannitol, an affordable and accessible natural substance, has been tried... and the results reflected in its mass distribution to the public were immediate and dramatic."

Guess we can all rest easy now, take him at his word.

Of course it goes on to say how many months and at so and so a price before anything can be known.

But, smart businessman, goes on to say: "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease. This information sheet does NOT include all information about the possible uses, directions, warnings, precautions, interactions, adverse effects or risks associated with taking Syncolein."

Sounds like "research" has found an outright efficacious cure. Just about, anyway. Goes on to clearly imply (I'll let folks do their own homework and come back with feedback for alaynedellow).

Meanwhile the message I glean from this website is that that his product is the effective application for a demonstrated efficacious substance. That's the apparent claim that I perceive.

Sounds to me like everyone can just get this stuff and hallelujah, pitch everything else.

That's about the shortest rant I have ever seen

1. Psychotherapist from someone good at it...which takes a little searching and trying...

2. Medication for depression. Since you have Parkinson's, best to start with a psychiatrist.

bepo
bepo
in reply to MarionP

What about B1?

MarionP
MarionP
in reply to bepo

Do not know anything about B1 for depression or apathy. Maybe someone else might.

But high dose delivered by needle is good for a short term energy boost if you are woozy or in some way energy depleted (in general, not specifically meaning PD, just in general. Whether that works for HDT oral I don't know.

bepo
bepo
in reply to MarionP

Read Dr. Costantini's report on how he has improved and stopped the progression of PD with thiamine, B1. Stopped the progression!

Despe
Despe
in reply to bepo

Bepo

Marion is very familiar with Dr. C. and B1. :)

bepo
bepo
in reply to Despe

Ok. I thought, by her comments that she did not know about it.

MarionP
MarionP
in reply to bepo

Dr. C's work stands for itself, and very well. Have been aware of him for two years and use his apprach myself, have been on hdt for over a year and turned a couple docs onto it, including a gerontologist who moved to my town after studying at Mayo. We may have gotten a couple of questions or questioners mixed up.

bepo
bepo
in reply to MarionP

That's fantastic. We are still experimenting with dose. It takes a while. We have also given the supporting evidence to our local doc.

Hmm. One doesnt need a physiotherapist but the support of other pwp.

Oh? Which "One" would that be?

Golly, looks like we have a sniper! Not only that, but one who immediately does the opposite of what she advises. How lovely.

Speaking for youself would be the ethical, non-presumptive, self-determining respectful response about "knowing" what someone, or everyone, besides yourself needs.

Unless of course you expect to extend to others the same automatic right you give yourself to decide (without asking or obtaining leave) what another person needs, and tell a third to shut up. Guess you missed the latest administrator's action about that.

Would you care to have what you have done done to you? Would you prefer to earn and leave open a record that future readers would wonder whether they should trust you or even read you?

So do you intend that others should follow your example, back onto you? Would that be as much fun for you to receive as you seem to find lobbing it out? Are you asking to find out? I mean, if you are so entitled, isn't everyone?

Speaking the queens english and not american i refer to myself as 'one'.

If you re-read your post i think you'll find you a tad aggressive. I leave you to fester alone.

Goodnight

a lot of sources including Amazon online. A tablespoon in your morning coffee. It is a sweetener so instead of sugar if you use sugar.

Sorry... my last response was to a mannitol question.

For you.... don't know what state you are in, but medical marijuana is definitely worth a try if it is available.. Does wonders for me.

My nerologist put me on Mirapex .05mg three times per day seems to help. I also take Low Dose Neltrexone 4mg taken at night before bed that worked amazing for anxiety and over all mood. I was diagnosed 5 years ago

Spelling issue: did you mean to say "naltrexone" (not "neltrexone")? If do not find "neltrexone" in my AHFS compendium.

Juliegrace
Juliegrace
in reply to MarionP

It is naltrexone.

PD sucks the drive out of life, very hard to move forward. What can work for me is other people motivating me to do stuff. The highlight of my week is the hour I spend every Thursday morning in the gym with my PT. If I had more money I definitely would employ more people. Hmmm, must do the lotto tomorrow.

My husband, Alan, was diagnosed first with extreme depression and hospitalised, then with Lewy Body dementia, before being put on the Neupro patch...a miracle drug as far as we were concerned. Then rediagnosed with PD. He in fact had extreme apathy. The levadopa didn't appear to be doing anything.

This was in 2012. The patch returned him to normal, (from lying on the bed looking at the wall). Mind you, the neurologist at the Movement Disorder Clinic said he'd seen it work, but never like this. He was back to normal mentally and stayed that way till 2018, when the patch stopped working. Back on the bed.

He's now on Xadago. It's helped a bit, but didn't stop the neurologist (who we now see privately) talk again about Alan possibly having dementia.

With the help of this site, he started on Mannitol (a diabetic sweetener) a few weeks ago. Now there's no fogginess or dizziness in the mornings and he's a lot more interested in what's happening around him. He's reading the newspapers and novels again, doing crosswords, enjoying visiting friends, and connecting more with our grandchildren. None of which he was really interested in since the patch stopped working. I'm hoping it will eventually restore his sense of taste, which has a big impact on him.

The mannitol gets thru the BBB and its suggested it may help the PD drugs get thru. He is still on theNeupro Patch, levadopa and Xadago, so maybe one or more of them is now working.

I sourced the Mannitol from the manufacturer here in Australia. Lots of info on google if you include mannitol and Parkinsons. The fact that it's used in hospitals for brain injuries and for brain surgery (as a rinse, I think), and has been for years, isn't known by retail pharmacists and even neurologists .

We are seeing our neurologist early March. It will be an interesting visit.

I hope this gives you another couple of choices.

gwendolinej,

What a great story about your husband and his improving symptom relief by just adding mannitol to his regimen! This may offer hope to many others who might be in a similar situation! Thank you for posting it!

Art

Thank you Art. I got the initial information from this site. We do care about and support one another, don't we.

It's a sad reflection on society that Mannitol hasn't been researched for brain diseases when it's been used in hospitals for so long. In response to my telling our GP about Alan taking Mannitol and that the hospital doctor said they used it for brain injuries, he said they used it for brain operations when he did his training in a major hospital in 1973. I think it's used as a rinse.

Mannitol reduces intracranial pressure in brain injuries. See here uspharmacist.com/article/hy...

the way it interacts with the body's water balance may explain why it causes diarrhea. I personally cant tolerate more than 1 tbs a day! The only result I get from it is slightly improved sense of smell, which is the one PD symptom I dont care about very much.

Very interesting, thanks for that.

That's amazing

Don't you find the mannitol causes diarrhoea , I stopped using it on my husband because of this but would love to try it again

gwendolinej
gwendolinej
in reply to Dragona

We followed the research dosage of 1tbs with coffee. Maybe you could start with a 1ts first up. It can upset the stomach. The mannitol you get from Syncolein has something in it to settle the stomach. We are not using that, but my husband takes Aximax (Omeprazole). He'd been on it previously, so I reintroduced it when I read the side effects. I don't know how that affects diarrhoea.

All of you, thanks for your support, my good friends!

Yesterday was not boring for me at all! I saved a patient's life with cpr as they were dying on the procedure table at work. And a beautiful girl half my age told me she loved me and wanted to marry me. Wow

She was probably half kidding but still!

Xenos
Xenos
in reply to bassofspades

Marriage is a serious matter. Do not be easy.

;-)

bassofspades
bassofspades
in reply to Xenos

for the record I am already married! And I dont fool around either. But its nice to be thought of in this way by attractive members of the opposite sex!

Hey, it’s a beautiful story!

Xenos
Xenos
in reply to bassofspades

I was just kidding

Bass,

That is great news!!! You are now are resident hero!

Art

Freaking awesome!!!

Well they don't come better than that, amazing day, I'd be smiling for a month if I'd done that, brilliant😀

Thanks Gwendoline for you reply we have some omerprazle will try.

Yes. this Apathy gives you a completely bad outlook on everything. Gone is the vibrant colour of life and sepia is all that remains. The enjoyment of rolling my old plane out of the hangar and going for a buzz around the patch or jumping on the Harley and heading on a weekend ride to the mountains is all but gone. Just can’t be bothered. No motivation to get out of the recliner.

As my husband's carer, I'm not prepared to put up with anything passively .But then I'm not the one with the apathy, so I can push on. We were lucky to have the Neupro Patch for a number of years, and now the Mannitol. When he recovers from a very sore back caused by a fall, we will tackle his other PD problems, and if his sense of taste returns, nights out for dinner.

So Pilot108, we care for one another on this site, including you. So try something that will help you get out of that chair.

Dear bass,

You reactions make me laughing, did you consider writing poems?

I write poems the way you react on writers reactions

Like the one you say; trust me it is boring!

I always say work with Parkinson not against!

Well anyway, make fun by cynism

Train hard, keep fighting!

Tsaar

If we dont keep our sense of humor then all is lost and pd has won!

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